The Lamictal

I’ve stopped taking my Lamictal. I didn’t feel like it was really doing anything for my snow and I don’t like the idea of being on a medication if I don’t really need it. I’ve gotten to that point where I want to just throw all my pills out the window and let my body suffer for the way it’s been treating me.

I probably should have talked to someone about it, considering I still don’t have a regular neurologist. But I just tapered down off of it the same way I started it. Half the dose for 2 weeks & continue until no more Lamictal.

I’m half tempted to just delete this blog because I’m so terrible about updating! I find this is a really handy way to keep track of my health nonsense for myself, but if I never update the thing, what’s the point? UGH maybe I’ll actually start using the mobil app so when I’m at work or out in the world somewhere, I can blog on the go, when things are fresh in my mind, and it’s not like I have to sit down at one time and force myself to type out something coherent.

Still Months Away from a Neurologist

When my neurologist left Johns Hopkins, I was distraught at the fact that I had to find a new one. I knew it would take time. And I’m usually a very patient person, but I’ve been without pain relief for too long now. But I scheduled a new patient appointment with another neurologist anyway and was determined to wait my 6months.

This month is January. My appointment was supposed to be February 1st, which was no problem! I could wait a month, that would be fine. I will just do my over the counter routine and it won’t be too bad because it’s only a month!

Surprise! They call to cancel my appointment. My doctor is now doing inpatient only that month, which is so not anyones fault and I don’t blame them, but I’m still upset. The earliest they could schedule me was June 1st. As in 6months from now JUNE 1ST! Now, THAT I don’t know how I’m going to make it to.

I do have an appointment with the Nurse Practitioner near the end of this month, but I’m not 100% sure what she can do for me? Can she prescribe me new medications? Can she recommend me for the nerve burning procedure? I just need SOMETHING that will work.

I’m going to make a list of everything I want her to cover with me and bring it so I won’t forget anything. So far that list looks like:

  • Botox?! is it worth/too expensive!!
  • Nerve Blocks work but are too temporary
  • Can she get me into the pain clinic for the nerve burning?
  • Stimulator trial?
  • plz just tell me to hang in there

Linda White, please don’t fail me now!

Tired

I am TIRED of being tired.

I feel just absolutely exhausted.

I am too tired to think beyond basic functioning. The other day I even took like a 3 hour nap when I got home from work. I guess it really doesn’t help that I’ve quit caffeine as well.

I am going to sleep. And sleep. And when I wake up I hope to be rested!

A Psychiatrist Came Through For Me

Friday’s withdraws were BAD. In the last hour of work, it got so much worse. And I was hidden underneath my desk, thinking how awful it would be if I ruined everyones day and went to the hospital.

When I finally got home, I broke down and ended up in the bathtub with all the lights out. I sort of consider it my little comfort place. I hadn’t been in the bath for more than one minute when my phone rings. It’s the psychiatrist I saw a few weeks ago with some info about pain specialists and biofeedback. And while I’ve got him on the phone, I tell him about this horrible withdraw situation I am in. He writes me a one month prescription and I pick it up from CVS. It was the simplest fix, and here I was thinking I was going to end up in the hospital. Sometimes it just amazes me how things like that can fall into place.

In the meantime, I’m only taking half the Cymbalta dose until I can get a new neurologist. I swear there’s nothing scarier than a sudden detox from a medication!

Suddenly Stopping Cymbalta

I am suddenly stopping Cymbalta, and it is not by choice. I went to the pharmacy to pick up my refill last night, but I left empty handed because my insurance won’t pay for it until the 12th. Somehow I don’t understand. She was telling me the instructions on the bottle stated I should be taking one pill a day. But I’ve always been taking 2/day since I last saw my neurologist. How did I not run out of pills in August then?

I have no idea. But from last night (Sept 6th) until the 12th I will have no Cymbalta to take. I have read all about this withdraw, including a lovely thing called Cymbalta Discontinuation Syndrome. I made it through an extremely difficult Effexor withdraw, but that was with tapering down. In this case, I’m going from the highest dose of Cymbalta, to zero within one day.

I am very conflicted. I like the idea of having to take a medication everyday to control my symptoms and prevent pain. But I have a fear of relying on medication every day as well. It comes from the days when my endometriosis was poorly controlled and I was taking birth control pills like candy. I would double up on pills (based on my doctors recommendation) for a short amount of time to try and prevent all the pain and blood. I would double up so much, that when it came time to get a refill from the pharmacy, it was too soon, and the insurance wouldn’t cover it. And I would cry when they denied me because I didn’t know what I was going to do. Letting the period come meant extreme pain, not eating, not sleeping, and hospital trips where I wasn’t even given anything for the pain. Those pills were the only thing stopping all that from happening, and I wasn’t able to get them when I needed them. And that sounds all too familiar right now. At least with birth control pills, there is no withdrawal symptoms. I am wishing future me luck with the next 6 days.

When I finally do get my Cymbalta back, I think I am going to half my dose anyway. Having no neurologist at the moment makes me free to make shitty decisions.

MIGRAINE AWARENESS MONTH

June is Migraine Awareness Month!!!! Here are some facts:

  • Migraine is the 6th most disabling illness in the world
  • More than 4 million people in the US have chronic daily migraine
  • 18% of American women experience migraines
  • More than half of all migraine sufferers are never diagnosed

 

Chronic Daily Migraine has really sidetracked my life; I never thought it would be like this. I see my neurologist more than my friends. I think a little more education and awareness is needed. Migraine is not “just a headache”, it is an actual neurological disease.

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Photos are of my actual brain MRI.

 

Diagnosis: ???????

I just came back from an appointment at the Johns Hopkins Wilmer Eye Institute. And I’m no closer to an answer than I was going in there. How many doctors have I seen so far…

  • Dr Stanley Shocket (retina specialist)
  • Dr Vivian Rismondo (neuro-ophthalmologist)
  • Dr Janet Sunness (The Hoover Low Vision and Blindness Center)
  • Dr Meyerlee (Wilmer Eye Institute)
  • Dr Daniel Gold (neuro-ophthalmologist)
  • Dr Amde Selassie Shifera (Uveitis Clinic)

I am just physically and emotionally exhausted.

I am tired of getting my hopes up for nothing. And I just feel so hopeless every time I am told that my eyes are normal. My brain is normal. Everything is so normal. Then why can’t I see? Why do I have this visual snow and blind spots? What am I going to do the day that the blind spots completely take over my vision??

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Look at my cool fluorescein angiogram. What a healthy eye 😐

My first doctor said it looks like there is decreased blood flow in this photo (the bottom part) but the second one I saw told me this is normal. I don’t know what to do now.

Rare Disease Day 2016

Rare disease day is February 29th 2016! I just recently found out that one of my diseases is considered rare.


Visual Snow Syndrome aka Persisting Perception Disorder – the persisting visual symptom of seeing snow or television-like static across the visual field, constantly, in all light conditions. It comes with a whole major list of symptoms, including visual disturbances (seeing trails, afterimages, floaters, halos etc.), tinnitus, fatigue, depersonalization and derealization, and brain fog. 

No treatment.

No cure.

Very little research. Most doctors don’t even realize that it is it’s own condition, and will diagnose it as a symptom of migraine. 

Spread the awareness! Tell your story.

http://www.rarediseaseday.org/

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Chronic Illness Anthology

I’ve found this anthology, currently looking for people to contribute. I’m SO excited!! Here’s a link to the creator, who is also a spoonie!

http://chronicillnesstruths.tumblr.com/aboutthebook

I’m trying to write a few pieces for it, but I have a lot of trouble to concentrate. I think it is mostly the brain fog. I know exactly what I want to say, but random words and thoughts keep coming out.

Also I’m feeling a little bit lonely, so maybe I need some more spoonie blogs to follow. I just feel so separated from healthy people around me, and I kinda of want to be involved in something.

Effexor (Venlafaxine) for Migraine

As of today, I think that I am fully detoxed from Effexor.

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These pills are the literal Devil. 

I was put on it in October as a migraine preventative, making it my second anti-depressant prescribed for this reason. And the second one that didn’t work.

Almost immediatly I got hit with the side effects. It started with nausea and a loss of appetite. I lost 19 pounds while on this medication. Other side effects I experienced are:

Easy bruising, nausea, fast heart rate, sweating, changes in appetite and weight, dry mouth, yawning, dizziness, anxiety, feeling nervous, sleep problems (insomnia), strange dreams, and tired feeling.

The whole time I took this medication, I just felt unwell. I felt weak and tired, and sicker than I already was. I’m sure the not eating thing contributed to that a large amount. I couldn’t do anything without my heart rate jumping out of control.

While I was withdrawing was the worst. I would get this feeling like I was somewhere in between being awake and being asleep and nothing felt real. The best way I can describe it is that moment when you are in class or somewhere and you are starting to fall asleep, and you are aware of it, but there it nothing you can do to stop it. It was exactly like being awake through that moment. You can feel that you are no longer present, but you cant wake yourself up. It’s the weirdest feeling I’ve ever felt.

Now that I no longer take it, I feel my appetite has come back! And I’m sure I have gained some of the weight back as well. But I don’t get as dizzy every time I get up, and my heart rate doesn’t keep me up at night anymore.

The only thing I will kind of miss about this medicine is the dreams it made me have. I have such vivid and complicated dreams! And I would remember them; not just when I woke up, but days later. There were complex plots and different characters and people’s faces! It was great until the dreams turned into nightmares. And most recently, an episode of sleep paralysis, which I had never experienced before.

Bottom line:Effexor (venlafaxine) was not an effective treatment for migraine for me.